Jack’s twin boys were born at 32 weeks. He opens up about how going through a neonatal experience has affected him and his family, and offers his advice to parents and other NICU dads who are going through similar.
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Jack’s Story Of Remy and Luca’s Premature Birth
Our story begins last August, we were just over 32 weeks through our pregnancy and our expected twins were what was known as Monochorionic-diamniotic or MCDA twins, the product of a single fertilised egg, resulting in genetically identical babies. MCDA twins are fairly rare and can have a number of problems during pregnancy, so we were considered high risk.
Every couple of weeks, we would pop into Lister Hospital to have the boys measured and scanned, testing the placenta's efficiency. Our first born, Ruben (almost two at the time), was born during lockdown in 2020, so I had not been able to attend his scans (apart from listening via the phone).
However, for the twins, I cannot describe the scans more than just being mentally draining. In my mind, I had pictured these moments as being quite wholesome, full of laughter, maybe a joke about "twin one doing a dance" and "sitting on top of his brother", but these bi-weekly scans were quite solemn and serious, conducted in almost silence apart from the sounds of the equipment.
The twins were always measuring on the small side due to the placenta supporting both of them, but at 26 weeks we found that the boys' growth trajectory had started to flatten. We were now to have weekly monitoring - it was best to keep them in as long as possible, but the doctors had to make sure their growth didn't start to falter.
Basically, they were looking for the moment it became safer for them to come out vs staying in. As identical twins, we had been advised that 36 weeks was the latest they could be delivered, but it now seemed that even that would be too far to reach. Each week was a battle to hear the words, "we shall see you next week". On week 32, we didn't hear those assurances.
At Week 32 We Were Told The Twins Needed To Be Born
The numbers were checked and re-checked before we were informed that they needed to come out in the next few hours. You can try and mentally prepare for those moments, but when it happens, it's a bit like a dizzying out-of-body experience as you try to grapple with reality. We had expected at least a few days' notice. Jen, my wife, wouldn't even be able to even go home first, no hospital bag with her, not able to explain why she wouldn't be home to put our eldest to bed. Everything was thrown into disarray. Desperate calls to parents were made to sort logistics as Jen donned a surgical gown and was put onto a magnesium sulphate drip.
The morning itself went at an extreme pace, the panic slowly subsided with the reassurance of the midwives and doctors, and we caught up and digested what was happening. 5pm came and went, as babies with even higher risk went to be delivered and after a couple of abandoned attempts. At 3am it was our turn.
The staff at the Lister were complete professionals. The operating theatre was so calm, so ambient in comparison to the chaos in the hours prior. The team put us at complete ease. Twin one was going to come first, slowly and calmly he arrived, kicking his tiny little legs with all the energy he could muster. "He's a wriggler!" grinned the midwife. Within three minutes, Twin two had arrived to a raucous roar of crying. We had our two names lined up for several weeks now, not knowing which name to give to each baby, but from that point it became clear, we had "Remy Wriggler" and "Loud Luca", both born at 3lbs.
The Advice For NICU Parents We Always Pass On
We had prepared ourselves for the prospect of a NICU stay. One piece of advice that my wife passes on to expecting twin / preterm parents is to familiarise yourself with the unit, having a cup of tea with some of the staff and having a guided tour around. We had done just that, knowing that they were always likely to stay for a while. Prior to expecting twins, I knew nothing about NICU, let alone that 90,000 (1 in 7) babies end up there every year.
A visit there is much more common than you may think. According to a survey conducted by Bliss, only 15% of respondents felt they had a good understanding of what a NICU was and what it does. The same survey found that 60% of respondents had never heard of a NICU before. This doesn't give the average parent a good starting point if you were to end up there.
Fortunately, or unfortunately, we had come prepared. Our babies were lucky not to need much intervention, but they needed to grow a fair amount before they could come home. What you will never be prepared for is to say goodbye to your babies each night, leaving them with people you don't really know, having to go home and seeing their little cots all set up, but knowing how lucky you are that they are alive.
There is a bit of guilt here that is hard to put into words. You are so relieved, grateful, thankful that your children have been born safely unlike so many others that pass through the NICU doors, but why is it unfair that they are not able to come home with us? At home, Jen's alarm would go off every three hours, scrambling together the breast pump as she would sit and express milk for babies that were not there. It was heart-breaking to see, madly we were craving the hungry newborn cries in the middle of the night!
Any NICU stay is hard, no matter the duration. The effects of a NICU stay on parents can last a little while and this is a really important factor to grasp, especially if you are reading this as family or friends of someone going through this experience, it doesn't just go when you pass back through the doors with your babies, there are scars and there is healing time required.
Quite honestly, I still find myself getting tearful quite a lot, despite being a year later when talking to friends, when certain songs play on the radio that take me back to this time, or even references to NICU on the news, something I really didn't expect all those months ago. I am clearly still holding a lot of baggage relating to it and it does still weigh heavy, despite the boys doing well, it's quite hard to explain. The image of my tiny boys, no bigger than my hand, in an incubator, tied up in so many wires, will always hurt. I doubt that pain will ever really go away, and I still think about it daily.
What Helped Us On Our NICU Journey
In terms of advice, there were a few things that helped me on the NICU journey. Firstly, absorbing as many NICU stories as possible could really reduce my anxiety. Instagram - it sounds a bit crazy as social media gets a bad rep, but I followed 20-30 different accounts, focused on NICU, twins, or preemies, and spoke to parents. Filling my feed with parents in a similar situation normalised things, it showed that their baby's lives are not dictated or defined by a start at NICU and nor should it be.
I would also sincerely advise not to go into a Google hole. Don't read medical journals, don't go searching for possible conditions your baby could/might develop. I did this and quite frankly what I read just wound me up and was not actually applicable or relevant to our situation. If you have questions, don't try to answer them yourself - speak to a medical professional, that's what they are there for!
Make sure you are communicating with the medical teams - maintaining open and regular communication with the NICU staff put myself and Jen at ease, and being able to be involved in our twin's day to day care really helped with the bonding experience. It also really educated us in the NICU medical procedures and the babies' conditions, and that knowledge felt like an element of control, something that you are all too aware is lacking in the entire NICU experience.
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